Little Words

I did my family a disservice in yesterday’s post. They talk about Madeline often, and I know they miss her with all their hearts. I was just sad that, in our first gathering together since her service, no one mentioned her. Including me. I do realize that the onus of talking about her lays on me and Mike. And I understand that no one knows how to act or what to say for fear of upsetting us. I have the same fears you all do. I don’t want to be a downer. I don’t want to upset the people that are also missing Madeline. I don’t know how to act or what to say most of the time, either.

But I do know that I want to talk about Maddie. Talking about her makes me feel better, I don’t want anyone to think they can’t mention her. If we don’t, it’s like she was never here. And she was here. She was here, and she mattered so, so much.

I will tell you the one thing I don’t like, the one word that makes me cringe, the only word I just can’t say or write. I prefer the term “passed away” instead of the word that starts with D that means the same thing. You know, it rhymes with “head.” I know I’m picking a tiny bone, but I cringe every time I hear it or read it. So yeah…just avoid using that word around me, and we’ll be golden.

My friend Christi sent me a text today sharing a memory she had of Maddie. It was a moment that I didn’t witness, part of a larger memory of a fun lunch the three of us spent together. Little stories of only a few words can make such a difference in my day. At the moment her text arrived, I was sitting in the car crying over what could have been. After I got her message, I was smiling over what was.

MelissaG says:

FWIW, a stranger in Wisconsin will never forget your Maddie. I had my 3 boys at the zoo a few weeks back and there were purple March of Dimes stickers lying around (near some pretty purple flowers) and it made me think of her and you. I never knew something like this could touch my heart so much. She will not be forgotten, she is a great incentive for me to value each precious moment I have with my family. My heart continues to break for you. I know sorry doesn’t mean much but I truly am so sorry. Her beautiful soul lives on and am thankful to have learned about her.

Amy says:

I too like to speak of my sweet boy who passed away at just 2 days old. Not constantly, since it has been 4.5 years now, but every so often. It makes his life feel more real and expresses a very real part of my being.

Your hand-print post was so moving. I will never again be annoyed at the tiny handprints that I am constantly clearning off my sliding glass doors. I will cherish them.

Krissa says:

I dont think you did your family a dis-service as I am sure that just like you they were thinking about her the whole time, missing her smile and laughter but was trying to be brave for you both at the same time.
Your family knows you, and loves you and Maddie. Keep those moments alive, keep those memories of sweet Maddie with you always. We live over the other side of the world, and have five boys. I speak with them about Maddie and how beautiful she is. I make sure that they (as family) learn to appreciate every moment that they have together because you just don’t know what could happen.
Maddie will always be remembered, and she has has touched so many lives, including us from Australia.
We send you love, kisses and hugs…..you are both amazing and so very brave
Love sent to you with lots of prays and thoughts.
love her hand print

The amazing thing about your daughter is that she has left her little handprint on thousands (if not millions) of lives around the world. Not a day goes by that I, and countless other strangers, don’t think about her and say a little prayer for you and your husband. “She was here, and she mattered so, so much.” She was, and she did, and she still does and always, always will!

Kira says:

Oh Heather – you have no idea how many people remember Maddie every single day. Strangers whose lives she has touched. I know it is not the same as having met her in person, but you are right….she mattered so, SO much. When I donate to the March of Dimes at the grocery store, I write on the little card “For Maddie” and they hang it in the window of the store. As I walked out, I saw another card from someone else that said the same thing. People in a city on the other side of the country are thinking of your Maddie. Not a day goes by that I don’t think of her….of you. So please, don’t worry – she isn’t forgotten, and she most definitely mattered.

Hi Heather. I agree with Kira; Maddie has touched so many lives. In my house, I think of her everyday when I look at my daughters. Maddie reminds me that life is too short. Whenever I think of Maddie, she helps me keep perspective of what’s truly important: love.

Ellen says:

Heather – I’m with you all the way on the ‘D’ word. I don’t like using the word “buried.” In my family we prefer to say “planted.” Unfortunately, some take it as being disrespectful, but my dad and I feel that “buried” is just too abrupt. “Planted,” on the other hand, helps remind us that life continues along in another way.

I thank both you and Mike for Maddie and sharing your feelings and experiences. The color purple was always something special shared between my Grandma and me. She used to tell me it was a color of sophistication chosen by the intelligent, unlike pink (sorry color pink lovers). When I see purple now, I think of Maddie and my Grandma and I smile. – Thank you

Your daughter was a beautiful soul. We all can just see her light in every picture and every video. She continues to light up the lives of so many people. Her story, and yours, is an inspiration to us all.

I pray that you find peace. I don’t believe it will ever get easier, but you will be able to understand it better someday.

Remember Maddies as she once was, the happy, beautiful baby that lit up your world. Let her give you the light you need to get through this hard time.

Rachel S says:

I love you. I don’t know you but I love you and your husband and your little girl. You are the strongest person I have ever witnessed in my life. You are stronger than I ever could be and I look up to you.

I am glad you posted this because I wanted to tell you that there is not a day that goes by I don’t think of Miss Madeline. I have the picture I carried the day of the March of Dimes walk in my kitchen. it is an 8 by 10 that sits on my windowsill in my kitchen. It is the one of her in the bjorn when Mike was holding her in the pink hat. It is my favorite picture and it is the one that is on my site and march of dimes page.

I think of you and Mike as well and can only imagine what you are going through.

eden says:

I’m glad you got that text from your friend. I was thinking about what you said about all the video footage you have of Maddie … Heather I hope you always always get funny, cute, gorgeous, quirky memories of Maddie flooding back to you. And all the wonderful people who knew Maddie in real life can share them too, for a long long time to come.

Maybe …. if you feel like it, you could ask people (in cyberland or IRL) for their favourite memories/blog posts of Maddie. To help celebrate her wonderful life.

I remeber at Blissdom, you stood up and introduced yourself for some reason I now can’t remeber, and everyone clapped. I believe they were clapping because every one recognized you. Recognized you as the mom of that GORGEOUS LITTLE GIRL MADDIE with the adorable hair, beautiful eyes and infectious smile.

Amy says:

I am a stranger that came to your blog via the March of Dimes website. I have commented a couple of times but never know quite what to say. Maddie has touched so many lives. I cry and laugh when I read your past blogs. When I want to laugh, I read the “Mad Lauer” blog. I shared it with coworkers one day and we all laughed.
Take care.

I’ll listen to every thing you ever want to say about Maddie. Any time. The love you have for her will never be a downer, and eventually, every memory will come with smiles and sighs and not tears. Keep talking, Heather. xoxo

I think you are amazing to share your experience and educate people about what this has been like for you. I always try to say “passed away” with people but that’s only because I’m not comfortable using the d-word either (so, I was thought I was doing it for me but was pleased to find out from your post that the people who were directly affected by it might get something from it too). I have no memories of Maddie obviously but I do remember the first time I saw her photo….she drew me to her immediately and I can’t get enough of her photos and your stories. Thank you so much for continuing to share….I don’t know if it is strength that drives you or something else, but whatever it is…we love hearing about Maddie.

I have been lurking on your site for so many weeks. I always wondered if I would ever comment…honestly, I feel like you are part of my family because of how much I think about you and your family. But, at the same time, knowing that we are truly strangers, how awkward would it be for me to insert my comments into your life.

This post has shown me that I must share how much you and Mike and Maddie mean to others, and how your Maddie is living on in my family.

My dh has thought that I’m insane because he sees me visit with amazing consistency…but then one day he sat with me and read your blog and we talked about you and Mike and Maddie. The first time I visited and saw the movie that was made in honor of Maddie, I sat and watched it with Mama’s Boy, my 5 year old son…he said she was so, so pretty. And funny (this is an important quality in a woman for him). I watch your videos and am half between tears and laughter, a lump in my throat because this beautiful light of life no longer exists on our plane…or wait, does she? Because, trust me, within minutes of watching the “Wow…” video, I began teaching my 15 month old twin sons how to say that. Cheeks is getting pretty close. And the other twin, Chops, can get pretty close to “breaking it down” in his high chair when we are listening to music. Maddie-style. Next, we’re going to work on putting up our dukes like Maddie.

For as much as you and Mike and Maddie have offered me and my family, I hope that this comment/thought/knowledge brings something to you.

Sweetie, you did not do your family a disservice with what you said yesterday. You feel how you feel and it is really good that you have this as an outlet for you to use. I hope your family doesn’t get upset for what you say. It’s true, sweet little Madeline needs to be talked about. She did matter, she still does and ALWAYS will. My own children know who she is. She will always be your sweet little Maddie Moo.

Vicky says:

I wish I had a memory of Maddie that I could share with you. I can share this with you. I don’t even remember how I got to this blog, but the first time I saw Maddie’s pictures, I was enchanted by her beautiful big crystal blue eyes and that infectious smile of hers. To me, she just has a sparkle about her. I love seeing pictures and particularly love seeing the videos of her.

Reading what others have said, I’m amazed by the impact this little girl has had literally around the world. It’s just mind-boggling. I can’t know the magnitude of your pain, I can only imagine. I pray that you realizing the impact Madeline had on the world is comforting to you on some level.

There is a book called The Shack by William P. Young, that I found very interesting and comforting. This might not be the time for you to read it, it is very sad in some ways, but I would recommend it to you for some time in the future. It tells of a terrible thing that happens to a little girl and how it affects her family. Particularly, her daddy questions how a good and all-powerful God could allow such a horrible thing to happen to an innocent child. In it, God talks about how He realizes that we can be so angry with him. Anyway, I think it might be helpful to you maybe not now, but in the future. Keep it in mind.

Pina says:

She’s not gone. She can’t be. She was too vibrant, too real, she was here. Her existence is now different . She’s still here, just in a different way. Where is she exactly? I can’t answer that. I don’t know. But she was more than her body. Much more. That thing that made her her, her spirit, her essence, her self. Where does that go? Her body is gone but she is just as real today as before she passed. Of course it hurts not to see her, be able to touch her. Just remember that our time on earth is short. The difference between 1 year and 65 or 88 years…it will all be gone in the blink of an eye. But you will be with her again. And that will be forever.

KR says:

I have a friend who lost her son. He sure did live a life, was involved in so many activities in town, knew everyone, everyone knew him and it helped her so much to know how many people knew and loved her son. He was here, full of life, laughing and happy and then he was gone in an instant. It was so hard for us all to wrap our heads around. I still look at the chair he sat in the night before he died, telling us all kinds of plans he had in life, and the emptiness of that chair just shakes me. I hate when anyone else sits in that chair and I hate when it is empty. It’s odd. The cycle of this takes crazy twists and turns. I know that everyone wanted to tell her stories of her son, then as time passed, they felt the need to let her lead the conversation. I am sure she felt that she did not want to bring people down too, because the mention of him made everyone cry, but I am sure she felt empty when a conversation would happen without a mention of him. Losing him was and will always be the BIGGEST moment of her life and to not be able to mention that is SO hard. It amazes me how much everyone felt that she should ‘move forward’. It has not even been a year and people are ready to heal so they want her to heal. Absolutely impossible. I think people just want to make her feel better, so they feel not bringing it up is the solution. I am glad you are able to express your need to talk about Maddie. No one knows how to act in this situation, so honesty is SO important. Yesterdays post moved me beyond words, just seeing that beautiful little handprint took my breath away.
I am thinking of you, thinking of Mike and thinking of Maddie – everyday.

Hi Heather, I have no specific memories to share with you, as I am another internet friend…however I can share with you how your story and Maddie’s story, have changed my life.

Before reading about Maddie, I had less patience with my son, my husband and our dogs. I didn’t try hard enough, and far too often let small things get to me. I spent too much time being angry.

Before reading about Maddie, I didn’t take the time, every night, to kiss my son in his crib because or to read to him. I didn’t take the time. I now realize that time is not guaranteed for anyone. I now take the time.

Before reading about Maddie, I knew far too little about March of Dimes and all of their important research and developments. I considered MoD just another charity. I now think differently and will act differently when giving gifts of support and time.

Before reading about Maddie, I took alot of things for granted, too many things…I’m trying to change all of that and I am choosing to change, one day at a time.

Your choice to share Maddie’s world and voice with all of us has made a difference. A real, honest to god, difference. Although I would give almost anything for you and Mike to NOT have gone through these last 6 weeks, I am grateful that you choose to share it all with us….even the painful stuff.

Jen quebedeaux says:

I believe in God, and the afterlife, and I most certainly believe Maddie is still with you. She may have left her earth bound body but her spirit is all around you and in everything you and your husband do. I don’t know you or your precious angel, but she lives in my heart just from your stories I’ve read of her. Your baby girl lives in all of us that read your blog. Little maddie is a well loved blogstar. Thank you for sharing her life and inspiration.

Kim says:

I’m glad you guys talk about Maddie often. It is through words and memories that she will live on for you.

I’ve never met you in person, or had the pleasure of meeting Miss Maddie. However, I do have a little memory to share with you. I read your blog every day before and still do now. I’ve always loved the video Fridays. Often when I am reading my daughter Maya is sitting on my lap. Every time I played the videos she would try to copy whatever Maddie was doing. It was so cute to watch one little girl try to imitate another little girl her same age. She still watches the videos with me!

We were speaking of Maddie at a Memorial Day get together this past weekend all the way down in Austin, Tx. She is forever loved by so many people, she has reached more hearts that you will ever know. Wishing you a good day today!

I love your stories and memories of miss Maddie. My husband and I are followers (moooo or is it baaaaaa?) of you and Mike, and we talk about your family like we know you. And we remember Maddie daily.

I do have a request… if/when you’re ready for it. Can you tell us a story about a time was Miss Maddie was being mischievous? Part of that beautiful daughter of yours was testing the limits and figuring out how she fit into the world. And I’d love to hear about it.

What’s funny is that I detest “passed away” while I don’t mind “that other word”

I dreamed of Maddie last night. It was weird. She was … well ya know … but we were able to inflate life back into her and there she was, giggling and happy and sparkling and very very alive … and I thought “oh, so we just need to do CPR forever and she’ll be okay?”

It was *weird* – but I’ll take it – it’s the first time I saw Mad in person – even if it was just a dream.

Melissa says:

I’m so glad you were able to smile. The picture of Maddie with her foot in her mouth does it to me every time I see it. I just love it.
I hope that your post encourages your friends and family to document all their moments and memories for you to look upon and smile for years to come.

kristin says:

Heather,
My dear, dear friends lost their teenage daughter very suddenly a few years ago. I, too, made the mistake of assuming that they would prefer to NOT talk about Leslie. All it took was a reminder that they were aching for Leslie to be kept alive through others’ words and memories — which they shared with us one night after too many glasses of wine. Since then, we talk about Leslie whenever she comes to mind. Sometimes everyday, sometimes not. But I have a feeling that your friends simply needed your reassurance that you WANT to hear about MAddie. That it helps. I have a feeling you won’t have to share that again–like us, your friends probably need to talk about her too and are grateful that you have given them the green light to share.
Also: I loved your handprint entry.
I am always a little disappointed when my windows get cleaned and wipe away my toddler’s handprints. I’m SO GLAD you captured that on film and will have that forever.
Love,
Kristin from Atlanta

I completely understand your post from the other day as well as today. I can understand that everyone is afraid of bringing Maddie up for fear that it will cause pain and I also understand that you need for them to continue talking about her. You are not a downer! You are simply dealing with the most unbearable situation and I know that you give so much strength to me and all your readers!!! Thank you for sharing your lives with us!!!

First off, I don’t like any variation of the D word either. I’d even rather say kick the bucket than the D word. I have trouble with saying “we lost mom” too because we didn’t actually LOSE her. I know exactly where her body is. It’s not like she wandered off or something like she had dementia or we were bad mom watchers and lost her.

I think the most amazing thing about Maddie is that she hasn’t stopped making memories. After your post about not remembering if you kissed Maddie’s knees, I started making sure I kissed knobbley knees and “belbows” and tummies. I am a baby part kisser, but I wanted to know with definition that I did it. Maddie became a part of that experience. She was in my mind and my heart when I did it. Also, she’s there when I’m not getting mad about who trampled the playdoh into the new carpet.

Sandi says:

I’m grieving along side of you for a different reason. It pales in comparison to your daughter’s passing, but it’s my grief. Friends who know tip-toe around me and it’s wise advice to say to people to just say something. A trigger this past Sunday left me sobbing in public uncontrollably. I never know what those triggers will be and can’t anticipate all of them. But a gentle friend hugged me, not at all embarrassed by my tears. Those friends are my life line. Thank you for your raw words and emotions. It’s only a another mother who can understand this kind of despair. When I talk to God about my sadness I pray for you too. No mother should have to go through this kind of separation. I’m so glad she left you her little handprint. I’ll look for my handprint and will cherish it.

justme says:

Your feelings are NEVER a dis-service! Ever. If you felt that Maddie should have been mentioned don’t feel bad by bringing that to everyone’s attention! It’s very realistic that they didn’t mention her (but were all thinking about her) because they didn’t want to “upset” you…and now they know that it’s okay to talk about her! To share stories, cry, laugh, and smile!
I have a friend that lost a baby. At first I was really nervous to talk about her….but then she told me that it hurt worse NOT to talk about her. So I made it a point to talk about her and share the stories of her to short life!
I (I can’t speak for the hundreds of other people that post here!) LOVE hearing about Maddie! Keep posting and I will continue to be here supporting you right along with everyone else!

Unspoken words. It’s all so new, how could any of you know what to say or when to say it. The truth is you have to talk about it. You go to the gathering, put on that smile, everyone thinks Mike & Heather look peaceful today so I’m not going to mention Maddie and upset them. You might have been thinking a similar thing, I don’t want to bring everyone down so I won’t say anything. How very sad for all of you. Your all walking a new path and I am so sorry for the heartache you have to endure. Keep writing, get it all out because these firsts that you are going through may help someone to cope during their walk.

As to the rest, you need to do what’s right for you. When you need to talk about her, just talk. People know that you need to. And honestly, they probably need to also. And don’t think that you’re being a downer, ’cause you’re not. You’re doing what you need to do. Memories and talking are good things.

Marie says:

It is a hard thing for people to know just exactly what to do and say. I feel all your pain – yours and your parents.
Here’s what I did. I continued talking about my husband like he was still there. I used his name often and people got used to me doing it. Pretty soon it was stories, funny things and just his life that we discussed. You and Mike will have to just use her name as if she were still with you – because she is. Then all will be comfortable around you. I am sure you do it at home, just continue when you are with other people who loved her so, so much.

rachel says:

I am so impressed with how you are able to put what you think into words…whether or not you realize it, you are doing a true service to so many people. Additionally, this website is such a tribute to Maddie…

Michele Parker says:

Then can I say I have watched Maddie’s “Wow” video many many times when I’ve had a bad day just so she could make me smile?? And she did? That Maddie made a total stranger have a good day? That your little girl took my tears and made me feel light hearted?

Amy says:

“When you remember me, it means that you have carried something of who I am with you, that I have left some mark of who I am on who you are. It means that you can summon me back to your mind even though countless years and miles may stand between us. It means that if we meet again, you will know me. It means that even after I [pass away], you can still see my face and hear my voice and speak to me in your heart. For as long as you remember me, I am never entirely lost.”

May we all always remember Maddie!

Dixie says:

I have two good friends who have each lost a son in childhood, both little boys I knew. I know for sure that whenever we are together, those little guys are there, too. Sometimes it’s spoken and sometimes not, but they are part of our lives together and even though one of them has been gone for over 10 years, he’s still part of our relationship as friends. Forget them? Impossible!

Tricia says:

I remember the first and only time I got to meet Miss Maddie at the big playdate at griffith park and how she LOOOVED that red phone and playing with all the babies. She was having the best time, it was so cute. She never fussed or complained…I’m sure Bella probably bonked her or took a toy and she just kept smiling her gloriously beautiful smile. That smile is forever imprinted in my mind as well as on my heart. I thought happily as I followed you guys to the freeway, Bella and I both made fabulous new friends today.

I hate that word too…it’s just awful.

I know I live a bit far but I’d love to come down and go have some lunch/dinner/drinks sometime? Maybe we can get Matt , Jayneoni and some others too!

Big hugs and I hope you get to take a nice, long nap today. Love you guys!

I was moved by your handprint post yesterday. It is very interesting what is left behind for us to see and remember. I think of your daughter often, and even though I did not know her, I feel like I am keeping her alive in some way. She will never be forgotten.

First off I would like to take this opportunity to commend you on putting one foot in front of the other each day. I will not try to imagine to feel your pain because I couldn’t, although I was there walking NICU halls praying that my son would live. I now look at him and see everyday how we almost lost him, he breathes now through a white piece of plastic that comes out of his neck.

Maddie will never be forgotten as you have created a journal of her life with your eloquent words, and your beautiful videos of her. The toothy smile of Madeline will now forever be for me whom the march of dimes represents; children like her and countless others. Madeline, Mike and yourself have made so many people aware of this great cause, and what a honourable thing to do!

You are strong, and represent so many good things. I am priveleged to read your words, thoughts, and feelings about your beautiful sweet Madeline.

Anna says:

It makes sense that you don’t like the “d” word – it connotes a sense of something being gone. Even though Maddie is no longer with you, she’ll never really be gone. She lives on in the memories of those who knew and loved her, and those who loved her and didn’t even know her but have read about her life here.

You give us such valuable lessons… Your Maddie lives on, in you, your family, and in us. We think about her, it’s a sad comfort that she is living on in our spirits, but it’s the only comfort we have… Strange that even strange people who never saw you, Mike or Maddy can find comfort after her passing. I often wonder what it is that this little girl woke up in us…

Love your post today and yes passing away is very different then dying (to me anyway). Passing away to me means she went on to her other life with God and the ‘d’ word means the end. I read your blog often although this is my 1st time posting. I have 5 kids and cry often as I read because I could never imagine what you’re going through. Sending lots of love and don’t fear Maddie will never be forgotten.

Heather, I don’t know if this will make you feel better, worse or the same but when I heard about Maddie, my first thought was for you, of course, but my second thought was the visceral memory of the weight of Maddie in my arms. I vividly remember holding her for the first time at CBTL and thinking how perfectly she felt in my arms – just like my own. And her eyes! I am not the only one who talks about her beautiful eyes but seeing them for the first time in person I was mesmerized. The way she was grinning constantly and curious about everything was making me downright jealous. She is a spirit to be reckoned with. I’m ready to cry with you and talk about her any time.

I’ve been turning up the music and dancing around the house with my kids. I’ve been getting out the camera and the video recorder almost everyday day and capturing the little moments in my kids’ daily lives, instead of waiting for a holiday or birthday. Since yesterday I haven’t complained about hand print smudges all over the car windows! The song “Single Ladies” makes us turn up the radio a little louder. We wear the color purple more.

Lee2525 says:

You love talking about Maddie and I love your stories about her! And, I’ve probably watched the “Free Style” video a dozen times!! What moves!
I think of her many times every day as well and you and Mike.

april in NJ says:

I watched your video the other day (where Maddie is busting a move) and my 4-yr-old was with me… she knows that if the picture has an arrow, it can be watched so she asked to watch it. As soon as Maddie started moving, she said, “Maddie Moo.” Your daughter will never be forgotten… because there are so many of us “others” who will never forget her. Her passing has changed every single person who’s visited this site or reads your words daily. We’re better mothers because of your sweet daughter. Love and hugs from NJ.

Heather, I can share a little story about Maddie that I don’t think I’ve told you. Babito loved to look at your photos of Maddie whenever you posted them. I used to always show him the pictures. More than once, when he would be playing and I was at the computer, he would come over and say, “Daddy, show me the pictures of dat happy baby! She’s funny!” That’s what he called Maddie, dat happy baby.

I don’t think I will be so adamant about wiping all those tiny fingerprints off my glass anymore. Thank you for reminding all of us how quickly these tiny treasure pass through our lives and for making us all see how we are all connected. Please know that your story has even touched our children as my four year old say a pretty purple flower and asked me to send it up to Maddie “so she can smell the grape smell” as well. She was here and is still making a huge difference in all of our lives.

I hate that I don’t have any direct Maddie memories, but I do have a Maddie story: last week Catie got sick with a stomach virus and barfed all over my last clean pair of pajamas in the middle of the night. I grabbed the first thing I found that was clean: some yoga pants and my “Marching for Maddie” t-shirt. As weak & miserable as Catie was, she saw my shirt, smiled and pointed at it, and said, “It’s Maddie!” She knew Maddie by name before she passed away, she was always on my lap when I read your blog.

Alexandra )(? says:

I SO agree that the “D” word is way too blunt, especially RIGHT after she passed away. And so hard to believe, even for me, someone who just looks at her photos and her movies. She always looks so…alive.

hardcore says:

Heidy Martinez says:

I just wanted to tell you that I know exactly what you mean. In 2005 I delivered my son at 25 weeks and he only lived for 2 hours. After that people would act as if he was never here, I love talking about him and I love sharing my story with people that have gone through the same thing. I also want to mention that you are a very strong women and I admire you and your husband.

Michelle says:

Being honest in your thoughts and feelings is not doing a disservice to anyone. I’m sure it made your family realize talking about Madeline is something you treasure and although at times you will cry there will also be times you are brought great joy by hearing others talk about her.

I have posted a few times before and have never met you but your sweet Maddie has left a “handprint” on my life and my heart. There is not a time I do not think of Maddie when I see the color purple….beautiful flowers, a cute outfit or even when a “suped-up drag racing” car pulled up to me at a stoplight….they were rocking out – I immediately thought of “all the single ladies” and Maddie’s smile while dancing!

You and your beautiful family have made me take time and live life….not fly from one thing to the next and not even enjoy what I had just done!

I am so incredibly sorry about your devastating loss….you are constantly in my thoughts and prayers.

Hugs to you…
Michelle from St. Louis (well actually Herculaneum – about 20 miles south of St. Louis)

Funny, someone uses “Lost” to refer to what happened to my child, and I want to punch them. I use “D” right out.

I think the whole family thing takes a lot of time. I remember when people asked what they could do for us if anything, we (usually my husband) always told them “be patient.” And for the most part, everyone was, everyone understood that it might be a bit before I could express myself socially, and people are now, for the most, very good at bringing up Maddy at appropriate times. Our only problem came with some family who sadly understood “give us some space” as “YOU’RE ANGRY WITH US, WELL F U TOO” and we don’t speak with one of those people anymore and relationships elsewhere in that corner are strained.

I think of you all frequently. I think of Maddie frequently. I’m happy to listen anytime.

Debbie B says:

At our last family gathering – we talked about Maddie – A LOT!! It seems I can’t stop talking/thinking about her. I told my whole family about your awesome little girl and her incredible parents. Everyone pulled out their cell phones, went on your blog, and starting pulling up pictures of Maddie and passing them around the table. The picture of Maddie with her hair in two ponytails on top of her head was definitely a favorite. I have only been reading your blog for about 6 weeks, but I have spent hours going back into the archives, starting with your first entry. You, Mike and Maddie have touched me in a way I can’t explain.

Amy says:

I am glad that you got that text from a friend and were able to smile and laugh. I want to apologize though. My daughter drew you a picture (that I sent to you) and she used the “d” word… I am truly SO, SO, SO sorry if that upset you even more than you need to be! It was never intended to hurt you!!!

Carrie M. says:

I am just another stranger that is drawn to your website everyday. Maddie’s smile (and need I even mention those eyes) warm my heart. I look at my 2-year old son Ben (who has special needs-CP and Epilepsy) and am just so eternally grateful to have him in my life. I dont say that to upset you, but to let you know that you and Maddie have changed me for the better. I am more appreciative, more patient, and thank you so much for sharing little Maddie with us. She will live on forever in your heart and in your memories,and she has influenced more lives than you know.

I talk about Maddie. I never knew her, but she has touched me and my life. I have told stories about your blog archives as if I knew her personally, because you were able to share so much with this. My daughter and I watch her videos. She loves Maddie, too.

With this blog, you have been able to share her – her life has touched so many others. We will remember her, Heather. She did matter, and she matters still.

My mom and I will never forget your Maddie. In January we were both really having a rough time, and I found the video of Maddie singing scales to show her in hopes that it would cheer her up. We both cracked up but were completely shocked that such a tiny girl had such perfect pitch. She brightened up our day when we both needed it very badly. She was and still is a ray of sunshine in my life. You can’t help but grin when you see pictures of her beautiful smile.

Amanda says:

I will never forget Maddie.
I’ll never forget finding your website and reading, reading, reading – following along with you and Maddie as we were going through our own preemie journey. Looking around it seems that many of us have walked a similar path. Preemies, Loss, Learning To Live Again and finally, finally Hope. Let me say though that I hate this path. I hate having to go through it and I hate hate hate that you are going through it too.

I still look at your About Me page from time to time and remember the first time I saw Maddie – about how I thought that she and my little preemie would laugh and play with each other about how Maddie could take her oxygen and mine could take her walker and they could have a ‘face off’ on who had the bestest gear. The oxygen rocket might have won just by shear size but I’m telling you – that walker we had was WAY decked out! It had bicycle streamers AND EVERYTHING!

Maddie always beat us with everything, rolling over, smiling, laughing, talking – but that was okay because we had a little friend we watched on videos often and that made us both smile. See, watching Maddie I knew that we would get there.

There are many, many memories in at least my mind and I’m quite sure that they are in others…

I can’t even imagine how hard this is for you, I never liked the “D” word either, when my father passed on when I was 10 and everyone kept saying that I screamed at my family one day and said he’s not….he’s everywhere, he’s in my heart, my mind and my very soul, he’s a part of me, and it’s not fair that you are all trying to take that away! And as with Maddie, she will forever live on….even if the hand prints fade, or are washed away, her heart prints will remain with everyone she touched! It’s hard for people to know how to handle tears, and tears are just summer showers to the soul, they keep us healthy, and not every tear is a tear of sadness, and in time, the tears will get easier for everyone to handle! You just have to remind everyone that it’s okay to help Maddie live on….by talking about her!
My heart and thougths are with you, and each time I see a pic of Maddie it makes my heart smile!

I have trouble throwing things away that my little boys do. Like colored pictures from church. And I take pictures all the time. Part of that is because of inspiration from children like your Maddie. She is safe in the arms of God now.

I loved her smile-I love how I could refer to her as “your elfish baby” and you wouldn’t get upset. Not thta we had many a conversations over twitter, but I really looked forward to seeing the photos of her, her smile was so bright, that even on my darker days I couldn’t help but smile back at her on the computer screen.

Since she has passed it has made me deal with events in my life where I have lost others. More specifically when I lost my twins. This past week I was really going out of my mind and I just couldn’t figure out why and then I realized that they would have been 12 this year. Twelve is such an important age in our house-you go through a rite of passage-at least Giggles did, and The Chicken is so looking forward to it. Cell phones, later bedtimes & more independance. And then I am sad for you because you will never have to the cell phone argument with Maddie, or the “But all my friends are doing it….” arguments. And it makes me cherish my other 2 that much more.

Many hugs to you, my friend. You & your family are closer to my heart than you will ever know.

I am listening I have a co-worker I always share about Maddie to.. she doesn’t quite understand why I’m “obsessed” with someone I don’t even know. As a parent, hearing your story makes me wish that, heaven forbid, if I ever have to deal with something this difficult, I would have as much love and support as you have. I hold you in my heart. Your Maddie is SO real and continues to touch so many. I love the handprint post… so so sweet- her little hand print- witness to her abundant joy.

Amy says:

My sister lost her husband about a year and a half ago…it seems like yesterday, and the pain is still so fresh for me. When he passed away, she felt the same way you did…that nobody wanted to bring him up, or that they were avoiding talking to her altogether. She sent me an e-mail that had been forwarded to her about talking about the person you lost. Even I had no idea how to approach talking about him, but the e-mail really made me realize that she NEEDED someone to talk about him. Although I had only really hung out with him a couple times, I still talk to her about all of the cool things he did…like making me one of my first legal drinks when I turned 21. I hope that this post makes people realize that that’s exactly what you need…you NEED to talk about your precious little girl.

Some dear, dear friends lost their 5-year-old daughter to heart failure. It has been almost 3 years now. They told us, at the time, that their greatest fear was that people would forget their daughter–who she was and what a part of their lives she would always and forever be. They told all of us that they wanted people to talk about her, remember her special days–her birthday, her “remembering day” (when she passed), each and every holiday, from Valentines to Christmas–because THEY would be remembering her then, and wanting us to share in that.
Those of us who have not lost a child were so grateful for their “guidance” on how to love them as they remembered and grieved. Often, knowing that the hurt of losing a loved one runs so deep, we become paralyzed by the fear of saying the wrong thing; so we say nothing. And because of that, we unwittingly add to the hurt that is already there.
Your post today will help people know your desire to keep her memories alive by talking, sharing and finding joy in the good times!!
Still praying for you! and enjoying each memory. . .

I hope you never stop talking about Maddie. I hope, when you are ready, you turn this blog into a book – because it’s the most real and beautiful writing on grief and loss that I have ever read. I hope you know how much you are helping others with their grief. I know you’d rather have your gorgeous girl back but what an amazing tribute and legacy she and you have created.
I hope you do whatever it is you need – scream, rant, cry, talk, not talk and don’t feel that you can’t or shouldn’t.
I hope that you find your way to living with Maddie in your heart and not your hands – eventually.
Much love to you and yours.

Maddie’s memory lives on in households all over the world – we talk about her, we think of her, we smile about our memories of her. It’s so hard to know what you need (or want) to hear at any given moment – thank you for telling us it’s OK to talk about Maddie any time. It’s a huge gift you’ve given us.

Amy says:

I never had the opportunity to meet the famous Madeline in person and in fact did not find this site until after she had passed away. But let me tell you that by writing this blog you have brought Maddie to life in my mind and in my heart! Thank you so much for sharing her with us!

I come to this site every day to read your words because you are helping me down a similar road, whether you know it or not, but also to see the photos of Madeline. I didn’t have the pleasure of knowing her in person but I want to see those photos and videos over and over again even though it hurts as I remember my son who died a month ago today. And then I always imagine Maddie playing with this cute little blond boy Oliver, my son who lived for 12 hours. I also think of Maddie when I sit by my other son Charlie’s incubator in the NICU. I hope it doesn’t sound too crazy or offensive to say that I feel she gives him strength, gives me strength, as does reading the words of you and your husband. Even without knowing her, I will always, always think of Maddie.

Karla says:

I understand the need to continue to say Maddie’s name and talk about her. I lost my sister; totally different circumstances – my sister was 38 with a family of her own, but my parents still lost their child. I feel like too many times we don’t even mention her anymore. She was a part of our lives, she helped to shape me into what I am today. And today’s posting is especially meaningful to me – my sister would have been 46 today.

That’s why you have to keep up this writing about Maddie and about you and MIke, and we can keep up this reading. Words are everything, have so much power, connect us — enable us to support you…. Sending you big HUGS and blessings….

Valerie says:

You have so much love, support, and respect enveloping you from near and far. I have never had a child, most likely past my prime to have one any more, but I ache for you, and for what you have had, have lost, yet will always hold so close in your hearts. Please remember that NO ONE knows what to say, but we are ALL with you in spirit.
A friend you haven’t met….
Valerie in Ohio

I hate that “D” word too. I never use it. It’s too final and it’s inappropriate to what I believe – that the person I love is just beyond. The most appropriate song I think I’ve heard is called “Homesick” by Mercy Me – describing grief as a homesickness because you can’t be with the person you love.

So… I’m agreeing with you, and I want you to know I never have and never will use that word in conjunction with beautiful Maddie’s name. Because she lives… she lives, Heather, you can see it in the hundreds of voices responding to your words. Words are so, so healing. I’m glad that you still find solace here.

Sarah M. says:

I think I might’ve posted on Mike’s blog once about what an amazing legacy your beautiful little girl has created. She’s had an impact on this world that is everlasting & has taught so many of us so many things, like the importance of love & family. I can live until I’m 100, but I doubt I ever have that much of an impact on so many people. She truly was a blessing. I never had the privilege of meeting Maddie, but she will live in my thoughts & prayers forever. Please know that she will never be forgotten.

Sending love & hugs from Louisville, KY

amy says:

My parents lost my brother some 18 years ago. We still talk about him regularily and while it sometimes brings a tear to my dad’s eye I know they appreciate talking about him, hearing new stories about him and remembering.

My niece died at the age of 5 months nearly 13 years ago and we talk about her as if she were just here yesterday. That really helps us, especially my sister, her mom. Her biggest fear is that her baby will be forgotten and I bet you have the same fear. Faith….hope….love….peace.

Heather – I don’t believe the onus is on you & Mike to bring Maddie up in conversation. What a heavy burden that would be for you both. Friends and family should also sometimes take the lead. Even if just to ask if you would like to talk about her.
But if you’re really desparate to talk about her and no-one has I’d definitely say leap right in and bring her up. Sometimes they will be waiting for your cue. It’s a tough balance for all the family.

And it’s good to hear you say out loud (or online) that you have a preference for a particular word. I prefer the other but am glad to know you feel uncomfortable with it. That way I won’t upset you by using it (as I have before – sorry). I guess close friends & family probably already know your preference but if not tell them.

From my experience with grieving a child the more communicate (out loud or in written form) your needs the better your loved ones can help you and the more you help yourself.

Sophie says:

I don’t know you but I would consider it a delight to read what you write about Madeleine for as long as you feel like writing. I just find her spirit to be so warm and inviting…and captured so brilliantly in your beautiful photos, videos and stories. I love hearing about her! Even never having known you or your family, I too feel better after reading about your little miracle baby and the very special bond she had with her very loving parents. It is a very special story and as one of your now regular readers, I hope you continue to tell it.

“Smiling over what was.” I’m so glad you have moments like that! Because what was was an amazing little girl who completely lit up her little corner of the world. Even I, a mere blog reader, can see that from her photos and read it in your stories. I think “passed away” is much more appropriate. I loved how you wrote it in previous posts, “passed on.” When I read those words, I see Maddie and others walking over a beautiful bridge that connects this world to the next one. Or I see her on a ship that sails gently on until it meets the horizon and seems to disappear. Just because we can’t see her doesn’t mean she isn’t still there. This poem has helped me in past grief and continues to help me now. I hope it can help you as you envision Maddie’s passing on. She has gone beyond. She still IS.

I am standing on the sea shore,
A ship sails in the morning breeze and starts for the ocean.
She is an object of beauty and I stand watching her
Till at last she fades on the horizon and someone at my side says:
“She is gone.”

Gone! Where?
Gone from my sight—that is all.
She is just as large in the masts, hull and spars as she was when I saw her
And just as able to bear her load of living freight to its destination.
The diminished size and total loss of sight is in me,
not in her.

And just at the moment when someone at my side says,
“She is gone”,
There are others who are watching her coming, and other voices take up a glad shout:
“There she comes”
—and that is dying. An horizon and just the limit of our sight.
Lift us up, Oh Lord, that we may see further.
Bishop Brent
1862 – 1926

Kim R says:

Just another stranger sending you thoughts and prayers. That is the very least I can do – you have so selflessly shared your wonderful writing and beautiful family with all of us. I hope these words can help to hold you up just a little.
From another friend you have not met,
Kim in NC

Heather, I’ve been following your blog on and off since last fall, and I wish I could do more than tell you how sorry I am about the loss of your sweet Maddie. I know you have many to hug you and hold you and remember with you . . . I’d just like to say that you have no idea how much your words–full of love and honesty and pain–might be helping others, so yes, words have amazing power.

I don’t like the “D” word either, I doubt we ever will. It seems so harsh & cold. I much rather prefer “passed away” as well when it regards my son. Don’t feel bad for feeling that way! I’ve had many conversation’s about this with my “angel mommy” friends & I think everyone is in agreement.

Donna Stepp says:

Your daughter will never be forgotten. Just today, I saw a baby and my first thought was how much he looked like Maddie. I am amazed that your Maddie is on my mind so often. It really does brighten my day just to picture her face. I wish I could do something to help you feel better but I realize that there is nothing anyone can do…maybe with time, it will ease some and be more bareable. I think its wonderful that a child could have such a positive affect on people she’s never met.

Heather, I know you don’t me, but I’ve been following your blog, since right after Maddie left. I just wanted to tell you that I completely understand about the “D” word. It’s been an entire decade, I’m now 31, and I still use the phrase “passed away” when I talk about my mom.

I was thinking about you today for no reason at all. I just wanted to stop by and say you’re on my heart today. I don’t know you or your husband, but I think of you both often and wish so badly that things were different. I miss your Maddie too. And I can’t believe how brokenhearted I feel for you. I wish I could send you a giant hug. Praying for better days for you both.

Ana says:

Of course she mattered. And she matters still and will always matter, especially to those who loved her. But I suspect also to those of us who miss her in this world although we never even knew her. My family attended a Memorial Day weekend get-together on Sunday, and I talked about Maddie and your family. I talked about what a beautiful and brave little girl she was and how she inspired me to get involved with March of Dimes. She is not forgotten.

I read this post this morning and have been thinking so much about it and about you and Mike. I’ve been thinking about all these less obvious aspects of grief that I had never really contemplated, but which you and Mike write about so touchingly and heartachingly. It struck me that this is your tragic reality – there will always, always be an immensely important person missing from every family gathering. What an impossible situation you are in – you will always want to include her yet, as you described, you don’t want to “be a downer.” I hope and pray that in time you and your family will find the right way to always include Maddie, with joy.

Ms. Mama says:

I just found you again today. As with all good blog hunting, it is a lot of fun to click the links and see where you end up.

Well, Around April 1 or so I ended up looking at your FABULOUS grilled cheese. I laughed out loud. For real.

Then I found you today. I had a lot of reading to catch up on. Thank you for writing about it all. I appreciate it. The toast, the rocket, the empty spaces, calling out like she is listening, about Mike’s trip to the ER, especially the warning Mike spoke of about Mike’s trip to the ER.

I cannot imagine what you are going through or how to make the decisions that you made. How to have a service for a daughter, yes, I said it too. Daughter. It just doesn’t feel right.

Thanks for reminding me to be thankful for what I’ve got and to enjoy life as much as possible while I got it.

Good luck with your progression and keep up the writing. I will check back with you.

Jamie says:

Heather, you are so sweet. I know it is hard for everyone around you as they are probably walking on egg shells never wanting to intentionally hurt you or Mike. Maddie was an incredible little girl that is missed terribly. Like you, I cringe at the D words. I use plural because I do not like it in any tense. There is something so cold about them. A very close friend and now sister in law lost her son when he was five. Even though it has been a little over six years ago, it is still a tough to discuss. We do talk about every chance we get but it remains tough. As a friend, you never want to relive those sad moments but you never want to let your friend down or have them thinking you have forgotten. Best wishes Heather… you are in my thoughts!

Kelly says:

Like so many of life’s other moments and experiences, there’s just no handbook for grieving – for all involved. You and Mike are doing an amazing job just putting one foot in front of the other, and making it through each and every day. It’s good to see you two leaning on each other for strength and support too…it would be way too easy to pull apart and not share in each others’ grief. I was relieved to see you are both getting some professional support…it’s not a fun process, but hopefully working through your grief alone & together will pay off in the long run and will be time well spent for you both. My prayers and thoughts are never far from you and your entire family!

My friend’s high school-aged daughter was killed years ago in a tragic car accident. The one thing she told me that’s always stuck with me, is that she loves to hear people talk about Kasey and what she meant to others. She said the stories and memories validate Kasey’s all-too-short life, and make her feel like Kasey made a difference during her brief time here on earth. Whenever I’m in the situation to offer condolences now, I really try to share a memory or story about the person and how they touched or positively impacted my life.

One thing that’s been evidenced over and over in these comments, is that Maddie’s sadly brief, yet sweet little life, really did make a big difference in our world. I hope the impact of her life brings you and Mike some measure of comfort and some much needed sweet relief.

Liliana says:

I understand how you feel. As you mentioned your family is avoiding to bring up Maddie’s name not to upset you, but the same happened to me when I miscarried my babies. People asked me to go same day out for lunch, I knew they didn’t want me to be looked in my house crying but I couldn’t believe it. The times when I felt the best is when I had friends and family to talk about my feelings. I had no memories to share (other than ultrasounds) but I had dreamed so much about having them.
I know must people will try to distract you and for what you mention that’s is not really what makes you feel the best. Anyway with your post I think by now they know you need to keep those memories around each day to keep you strong.

My love to you!

Liliana

Kandi says:

This may seem strange to most. It was really amazing that it happened to me. I only know and love you guys through your blog. I Love the video you have of Maddie and Her Daddy with him in her lap and her squealing. I have watched it a lot. I am a Mom of an Angel and I never got to hold my son, I too (love your tat btw) have a tat in Memory of Christopher. Though that isn’t what I wanted to tell you. I was pretending to tickle my 2 yr old niece and she started (never before or since) squealing like Maddie, I just looked at her and enjoyed the sound and she STOPPED squealing, got a bit closer to my face and said BABY! She isn’t much for talking yet so wow was I surprised. But I do believe without a doubt, Maddie’s Angel has free range and is roaming around touching people’s lives every minute of every day. Thank you for sharing her with us. Kandi

Everyone is looking to you to know what to do and say. Just establish your comfort zone and everyone else will follow suit. Everyone is different. I never liked when people mentioned my loss because it resulted in instant tears and I hate crying at work. At home it wasn’t as big of a deal. And I hate the term passed away so I would be one of those people who use the word you don’t like. Just communicate your needs. Everyone truly wants to do anything they can not to cause you additional hurt.

Cinthia says:

It is late and I’m getting sleepy, so I didn’t have a chance to read OPPs (other people’s posts), but I would hope no one recriminated your family for not talking about her. I feel that, if they don’t, it’s because of the pain and not wanting to upset you, not because they don’t love and miss her. Heck, I love and miss her, and I never met her in real life. Yours was just a blog I came upon, once upon a time (a.k.a. last year) and couldn’t stop reading. Can’t stop reading, actually, though I cry every time and miss that Maddie’s not there.

I was thinking about my favorite Maddie stuff and I loved the picture stories you did, like the ones where she was doing silly things and you built a story around them. But my favorite Maddie moment was the video of her doing karaoke into her breathing machine thing. I thought that was HILARIOUS. I bet God thought it was hilarious, too. I hope He is enjoying that adorable child, because we all sure do miss her.

I feel sad. But I believe we will all one day pass, and then… THEN, I will finally meet Maddie in person. I know it in my heart.

Heather,
My son has been gone for a little over 4 years now. I never used the D word. As you can see from my first sentence I usually use terms such as gone, went away, left, ….

I understand stories. That is what helps me too. When someone can tell me something about Micah that I never knew or have heard before it brings him back for a while and brings him into the present tense and not the past. I love stories about the boy.

Losing a child is a journey. We are in a “special” club. This is not a club any of us want to be in or be a part of. We did not choose this road but it was chosen for us. Talking about our children keeps them in the present. I know that I probably make people feel uncomfortable all the time by talking about Micah. I don’t care any more. I have to talk about him. If talking about Maddie keeps her alive for you then talk away. Everyone will get used to it and then they will talk right along with you.

When Micah’s friends come over to visit they know that they will have to tell me a story or some tidbit that I have not heard from them before. It brings my boy back to me if only for a short time. It makes my heart swell and comforts me.

Keep writing and talking about Maddie. It is how you will heal and is what will make you feel better.

“But I do know that I want to talk about Maddie. Talking about her makes me feel better, I don’t want anyone to think they can’t mention her. If we don’t, it’s like she was never here. And she was here. She was here, and she mattered so, so much.”

Is definitely true.

It’s so weird – but those who haven’t experienced loss can’t talk about it – they feel so uncomfortable. And even when I said to a room full of my friends (I was 20) “hey, I want to talk about my dad it makes me feel like he’s still around – or like he was or is or something but I like to talk about him.” and even then they would just stare blankly.

I, instead, found and always have gravitated toward people who have experienced loss.

Christine says:

Nobody is forgetting Maddie! I never even knew her, and I’m not forgetting her or you and Mike. I’m still thinking of you and praying for you. I thought about you over the holiday weekend, a time when everyone’s BBQing and spending time with friends and family, when you’re just so happy it’s a long weekend. “What are Heather and Mike doing?” I thought. My heart is with you! It really is.

This time in your life is just so fragile and people are afraid of how it’s going to make you feel. Maybe if you make a point of openly talking about her when you see people, it will let them know that it’s okay to talk about her too.

I first accidentally happened upon your site last month. I read it and cried. A couple of days later, I went back and cried again. And then a few days after that.

I told myself I needed to stop visiting so that I would stop crying. But now I find myself checking it almost every day, just to see how you and Mike are doing. I’m a complete stranger, but I feel like I’m checking in on a friend who has experienced a devastating loss.

I just wanted to leave a few ‘little words’ of my own. I feel like a lot of the strangers leaving comments on here feel the same way I do. We’re all checking in on you. We’re all getting to know Maddie. We’re probably all feeling a tiny, tiny fraction of your loss and sadness. I just hope that maybe if we all take a tiny, tiny fraction, that it’ll help ease the burden of your suffering just a bit. I hope it brings you some comfort knowing there are so many out there who care.

Dawn says:

I don’t know you or your family, but I happened upon your site shortly after Maddie passed. I come here almost daily now, wanting to know how you are doing and wishing I could somehow send you comfort. I know it isn’t much, but I am so very sorry for your loss and hope you and your family find peace.

Sara says:

I remember after my daughter passed away- I too dread the D word and to this day still don’t use it. Anyhow, it bothered me that no one mentioned her at all. One day, I was at a table of a bunch of friends and someone casually asked me the birth weight of my children. I ended up mentioning Amy Lynne, my daughter that had passed away and immediately, the whole table was quite and they listened to me talk about her. I then realized my mistake. This whole time they wanted to know more about her (she was in the hospital her whole life- she suffered a massive stroke) but they were too afraid to mention her for fear of my reactions. So now I mention her to them. She was real. She existed. She is my love and I can’t wait until I get to see her again.

I know it’s still so new and the pain is so fresh and everyone is missing her. They’re also afraid that they’re going to say something wrong. Even and especially the family members.

I adore that my daughter recognizes and knows Maddie on my computer. She’s so cute with it, “That’s MADDIE! Mommy! There’s Maddie!” And she talks about her like she knows her because we’ve spent some time reading and watching videos of your family together.

I love LOVE that she knows Maddie even if they didn’t meet. Or haven’t met.

I’m not a huge fan of religion but I do believe that we touch each other and lift each other up and continue to do so for all of eternity. Maddie is such an awesome example of that. So yes, I’ll talk with about her with you. And my own family. And our friends. Because she’s loved. Always.

Alexicographer says:

I went to a memorial service recently for a woman in my church, someone who had worshiped there since before I was born, someone my parents’ generation who was in her 70s when she died. She had two sons, one born to her and her husband, the other adopted by them, about my age (the adopted one a couple of years younger than the other). What I didn’t know until this service was that she also had a daughter, a little girl who lived for about 6 months, a little girl who was (I gather from the comments at the service), first “healthy” and then “sick” and who then passed away. A little girl the age of my own brother. A little girl whose mother (I learned) was helped by my own mother in finding a carrier, long before the days of Maya wraps and Ergos and Bjorns, so that she could keep her sick daughter close to her.

I didn’t know the family well, though I’d known them a long time. I was astonished, and saddened, though to learn there was a family member … well, I must have known her, I’d have been about 3 when she died … but one I didn’t know *of*, didn’t remember, had no idea that her mother had carried this grief of losing her daughter with her, her whole life. Yet, my ignorance notwithstanding, many, many people present at the service did know her, did remember her as they remembered her mother’s life, did talk of the joy she had brought to her mother during her far too short time on this earth.

I hope and trust the same will be true for Maddie throughout and, as in this case beyond, your lives. I know I think of her often, even though I never met her or her family.

Dane says:

What a GREAT post! You should be so PROUD of you for being able to express how you are feeling with likes and dislikes. You cannot but feel good/better when you talk about your loved ones-and with Maddie’s smile and dancing eyes-the conversation is endless.

Denise in Texas says:

I, too, prefer ‘passed away’, but find ‘passed on’ so much better. Passed on to a better, brighter, healthier, life in heaven. For me, it’s so much better to talk, talk, talk about the absent person, so feel free to. We out here in cyberspace are hurting right along with you, so just go ahead and tell us all about your sweet Madeline. She will ALWAYS exist in our hearts, as well as yours. We’ll never tire of hearing about Madeline, so talk to us and your friends and family about her and keep her memory alive.

Eunice Sarmet from Rio says:

Heather,
Just two quick thoughts to share…..When I experienced the death of a dear loved one, I gave myself permission to grieve. If a day (or two or three) came when I could push the loss aside and laugh, live, and be carefree, I relished it. But, when the days came that were dark and sad, I also allowed myself to sink in for a day or two……to wallow in my grief, allowing myself to cry, kick, scream, or do whatever it was that would make me feel better. It’s now 35 years later and though I still have occassional down days, none are as severe as those first few years.

Hi, I am an angel mommy also. I lost my son Hayden a little over two years ago. He was 14 months old and is missed everyday. I was reading your blog and I can totally relate to this post. I hate the D word. I cringe everytime I hear exspecially when they are talking about my son. I have a hard time saying it and i also would rather it be called passed away. The D word just sounds so harsh and i have corrected people before about it.

Dawn says:

I agree that you did not do a dis-service to your family. I have an angel, who would have been 12 this past April. I know my family thinks of her as well and sometimes we talk about her and sometimes we just look at each other and know. There is no need to apologize as everyone should understand. You are in my heart and prayers always.

Kelly Jo aka GotGRITS says:

I started following your site when a prayer request was sent out while Maddie was in the hospital. I know words can never heal or lessen your pain, but talking about these precious moments, videos and photos keeps her alive and with these she touches more lives. I also do not like the D word, must be inherited. My grandmother would always speak of when my Grandpa “went away”. Of course, to some not knowing, would have assumed my Grandpa had gone on a trip and not returned. I guess in some instance, this is how my Grandma got through the time without him. Knowing that he had gone ahead to wait on her and make a home–like he did when they were first married and she went to join him at his Army base. I am a Native American and the Cherokee have a saying that pretty much describes how Maddie lived her short life “When you were born you cried and the world rejoiced, live your life so that when you die you rejoice and the world cries.” Such great accomplishments in a short time, and so many lives she touched –and continues to touch. An angel on Earth and in Heaven.

God bless you!!!

Cristen says:

I always say that my son lived for 9 hours. Or say he lived for an incredible 9 hours. And it was the best 9 hours of my life. I prefer “died” to passed on, although I usually say “you have a brother in heaven” because it’s more direct and clear and there’s no misunderstanding with my little kids about what happened.

Many hugs to you and Mike. It WILL get better. You will remember the joys without the pain as time goes on.